After getting the news that the tumor and cyst were growing, I told myself that was awesome. After a few days of letting that settle in I didn’t feel like it was good news anymore. I don’t like to look at my situation and not feel 100% blessed. Yes some days I put this Z shirt on feeling like I am going to a battle I don’t want to fight but when I watch my boy swing on the swings or play trucks with his imagination I am beyond blessed that he is able to be a kid. I go in and out of these hospitals and see far worse things than my child having a tumor and sight issues. So when the doctor told me everything had indeed grown a very small amount but not enough to concern him, I told myself to count my blessings. And then to get the GREAT news on his sight!!! Yes!!! A blessing!!! It was an answer to prayer….more like a plea. Before going down to TX I found myself wrestling with allowing God to have His plan. I found myself telling God what the plan should be. And that was NO CHEMO. So when the ophthalmologist was so excited that he had returned to baseline I was excited too because baseline, all though still very bad vision in one eye, meant NO CHEMO!!! A total answer to prayer!! But as the days went on I started to feel the weight of the growing tumor and cyst. I like being brave. I pride myself on being a big girl…big enough to handle my problems as they come. I also challenge myself, with the help of my loved ones, to see how blessed we are. But I started to feel overwhelmed…defeated almost. I felt as though we are just waiting. Waiting on the insomnia. Waiting on the headaches. Waiting on the doctor to say the tumor is just too big. Flying home from TX my mind ran. How are we going to afford to keep flying down to TX. What if I have to find a doctor near us? What if I don’t like him? What if he needs another brain surgery??? No way I’m letting someone BESIDES Dr. Sandberg go digging around in his brain. Oh my gosh, you are so ungrateful Jessie….you just got great news. His eye sight is better….why don’t you rejoice where you can? I stopped chastising myself long enough to play a game of spades with Zayne.
I just kept trying to tell myself we were going in the right direction. It’s the small steps that we need to focus on. Sometimes that’s easy and sometimes it’s just not. So today heading in to take his port out it felt….almost not real…almost like we were going to get to the hospital and they were gonna tell me that his nose was too stuffy, or the cough wasn’t clear enough.
But sure enough after he was under I kissed his sweet cheek and asked Gods angles to be with him when I couldn’t.
And after a long hour and a half wait I walked in to find him sleeping…. Breathing……his cheeks pink with life.
And after they wheeled us out to our car I couldn’t help but feel like a huge weight had been lifted off. Just huge…..I found my head clear. I found myself rejoicing….fully rejoicing about something for the first time since he was diagnosed. I’ll take it. God has a plan…sometimes I can’t see it, Sometimes I don’t like it…but He truly walks us through. It’s not about getting to the end of the journey….it’s about rejoicing in learning and growing day to day. There is no end really. Life will always be uphill but there is joy to be had in every step.
I was so proud of my little man today. So strong. So calm. So ready. He never panicked, even when I started to lose it….he was AMAZING. There is just something so incredible about his journey. It’s like watching a transformation right before my eyes….and pretty soon he’s gonna sprout wings and fly!!
Here is super Zayne’s favorite song these days.